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Crohn's Disease Forum » Parents of Kids with IBD » Claire Update - Scope Weds


 
04-18-2011, 06:31 PM   #1
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Claire Update - Scope Weds

Sorry to have been absent a few days, my friends. The good news is a promotion at work but golly, I've been hopping!

I just wanted to let you all know that Claire is having a scope on Wednesday morning. We start the prep tomorrow night. She had some crazy labs indicative of inflammation specific to the GI tract so we scheduled this over a month ago. Her crazy mother was hoping it was "just" her arthritis. No such luck. Over the past 3 weeks or so, she has become symptomatic for the first time since diagnosis. While I'm thankful for the months of remission, I'd be lying to you if I said I wasn't worried about what our "next step" is.......and I know it is likely coming sooner than later.....

Thanks for listening.

J.
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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-18-2011, 06:48 PM   #2
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Awe I'm so sorry to hear that Claire isn't feeling well again

I went looking through posts the other day to see if you had been around.

congrats ! On the promotions ... that's wonderful !

I feel for you starting the "prep" tomorrow night...oh my! Does she get to do the Miralax and Gatorade? It's so much easier on the little ones.

Best of luck to you and Claire! Try not to worry too much Mom !
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04-18-2011, 07:16 PM   #3
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Sorry things are acting up Julie!! I have a feeling Claire can handle the prep pretty good! These kids are tough as they come!! Has Acra mentioned what he's leaning towards? EJ goes back this Friday to start Humira.

Congrats on the promotion!! I hope it's not too much more headache
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04-18-2011, 08:19 PM   #4
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@T - Thanks. I'll take the encouragement. Dr. Acra's prep is Mag Citrate (Claire prefers lemon - lol) and 2 suppositories. Ack. Yes, some bribery is in order and I have already been to Walmart. Ha ha. You and Gab have been on my mind. I need to get caught up!

@Dex - Thanks again. :-) She IS tough as nails. :-) The new job is crazy but good. I the Manager of Distribution so it includes the warehouse and stat room at the hospital. Who knew there was so much to it???? Not me! We parents shouldn't take all those supplies being at our kids' hospital besides for granted......I'm preaching to myself on this one!

He mentioned Methotrexate if this proves that the 6MP is failing. She was on Methotrexate at age 4 for the arthritis. Honestly, it didn't do jack squat. I'm trying not to be pessimistic though - I realize that we have too many blessings to count.

Love to my "peeps"

J.
04-19-2011, 08:17 PM   #5
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Hey J, hope it's going good for Claire!! Good luck tomorrow! Let us know what Acra has to say....that won't take up too much space!!
04-19-2011, 09:29 PM   #6
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Dex - We are in the hotel. Rounds one and two of prep complete. She's a lean mean machine that girl of mine......... She's sleeping soundly so all we have left in the morning is the last suppository and we should be in business.

Save me pages and pages for my Acra report. ;-) I'm assuming he will come out and talk to me and not send a minion. If he doesn't, I'll be getting arrested for barreling into the suite. ;-)

This cleanout, while I hate it, tells me we aren't in the hemisphere we were two years ago. For that, I'm thankful........

J.
04-19-2011, 09:47 PM   #7
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Just stopping by to wish Claire luck tomorrow !!



Hope to hear soon how everything goes
04-19-2011, 10:34 PM   #8
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Wow Julie...Claire is one tough cookie. We've only done one bowel prep and daughter is still talking about it 3 years later. Great big giant hugs to that precious girl of yours...and to you as well. I'll be thinking about you both often.

Last edited by FLMom; 08-19-2012 at 09:56 PM.
04-19-2011, 10:42 PM   #9
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Hey J,

I hope all goes well with Claire's scope and yep, she sure is one tough cookie...... ! Barrelling in sounds like a plan to me, I reckon if Matt's GI hadn't called me in I would have done the same thing!

Thinking about you guys and let us know how things go when you get a chance.

Big hugs to Claire,

Much love,
Dusty. xxxxxxxx
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04-19-2011, 10:43 PM   #10
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Good luck tomorrow Julie and Claire!
I hope everything goes well and please let us know how it goes. Kids are so resilient! I hope you got her some good bribery gifts
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04-20-2011, 09:47 AM   #11
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We are ready to roll. Just for Keona, here's a math equation that demonstrates my willingness to bribe:

7 oz of mag citrate = one Monster High doll (which Mom HATES)
Suppository 1 = one Pictureka card game
Suppository 2 = one coveted Squinkies bracelet

She's not cried or fussed a bit. The bribery worked TOO well. Love her heart.

Let's get this going!!!!

J.
04-20-2011, 07:30 PM   #12
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Ok we are home. In short active disease but small area, few inches in bowel on right side. He wants a CT next week. If small bowel is clear, adding "non systemic steroid (I'm thinkin entocort??????). He said though, that will only address the rt side disease. Help me, Dusty!

If small bowel is involved, we'll have to pitch the 6mp and make some decisions. So, sports fans, more next week.

She was m-a-d about waking up with no underwear..... I'm just trying to not address that one!!!

She has to be npo before the CT scan. I didn't think to ask but do you all think there's more sedation coming? I'm going to contact the doc tomorrow with all my random questions.

Love to all,

J.
04-20-2011, 07:50 PM   #13
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Thanks Julie! That doesn't sound too bad, though I'm sure you'd have loved to hear all clear.

I know as soon as I hit the submit button it will dawn on me what npo is...but until then what the heck does npo mean?
04-20-2011, 07:56 PM   #14
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Nothing by mouth - no eating. :-) Technically nothing per oral I think. LOL

Claire is in here. She says to put this on here for you all.

J.
04-20-2011, 07:59 PM   #15
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Tell her she has every right to!! Thanks...it never did dawn on me!!
04-20-2011, 08:00 PM   #16
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Hey J,

She was m-a-d about waking up with no underwear..... I'm just trying to not address that one!!!
More bribes???? Awww poor little love, it's often the little things, not that this is little, that really hit home ay.

I reckon you are spot on with it being Entocort......right area, right drug.

By pitching the 6mp do you mean get rid of it? Is he thinking that if she still has disease in the small bowel then the 6mp isn't working and the area in the right side is a skip area caused by problems further up?

My kids have never had sedation with a CT Scan but then they are significantly older. They usually have both oral and IV contrast, they always have IV but have had it without oral contrast and water only. The scan itself is over very quickly. It is normal to fast for 4 hours prior.

Please give Claire a big hug and mega gold star from me!

Love always,
Dusty. xxxxxxxx
04-20-2011, 08:51 PM   #17
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@Dex - the crab was directed at me talking about "npo" AGAIN. She and I are both tired tonight and we are too much alike! Just wanted to be sure you knew it wasn't at you!!!

@Dusty - I should've clarified. Pitch the 6MP and go to Methotrexate. She's on a subtherapeutic dose of 6MP ever since her liver decided to get as crabby as her mother. . We've been at a lowered dose since January....just long enough for the stupid Crohn's to creep it's way in again....

I'm not whining (yet!) because she really is doing well. But that doesn't mean I have to like any of this for her or any of our kids for that matter.

Hugs,
04-20-2011, 10:11 PM   #18
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Awe J, you get to be as as you want ! Maybe we can find an "I'm just plain Bit**y" Icon you can save for later if things get worse !

I'm glad there's is only just a "little" (not that it makes it better); ah hell...you know what I mean.

Bless you and Claire !

about the 6mp...I have had several specialist say that with this particular one...it will either work, or it won't and there is no grey matter in between with 6mp.

and hopefully you can snuggle up and have a movie night Has she seen Tangled yet? I think I am going to try and watch it this week. I just still LOVE the kid movies, even when I have to watch them alone now! LOL

I'm glad to hear that she did so well through the procedure tho! (well...besides that)
04-20-2011, 10:30 PM   #19
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Thanks for keeping us posted. All the best.
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04-21-2011, 07:12 PM   #20
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I am praying for your little one and your family.. All the best....
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04-25-2011, 08:31 PM   #21
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Hey Julie, how's the birthday girl getting on now??
04-25-2011, 08:34 PM   #22
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Well she's averaging 3 bloody loose stools a day now..... Frankly I found a pair of bloody stained underwear in the laundry just moments ago and I'd like to go crawl in the closet and cry. Is it the end of the world? No. Am I okay? Not really. I just flippin' hate it. I really really do.

CT is scheduled for the Thursday. I need a plan of action. I'm an action oriented Momma you know........

Thanks for checking in on us.

J.
04-25-2011, 08:37 PM   #23
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Ah Julie, I know sweetie!! Yeah, I know!!! Bless both your hearts!!
04-25-2011, 09:34 PM   #24
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Awe Julie....





my thoughts are with you
I understand all too well
04-26-2011, 12:20 AM   #25
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Oh man J, my heart goes out to you and Claire.

How heartbreaking for you hun. I understand the need to have an action plan, to know that things are being looked at and investigated. Good luck for Thursday and let us know how things go when you feel up to it.

Loads of love and hugs to you both,
Dusty. xxxxxxxx
04-26-2011, 08:05 AM   #26
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Just a cyber hug , from one mom to another. Keep up ur strength. Best wishes for a great outcome in the near future.

**Phyllis
04-26-2011, 01:42 PM   #27
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Just popping in J to wish you both good luck for Thursday
and sending a big squashy hug for Claire
xxxxx
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04-26-2011, 02:42 PM   #28
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Tell Claire that I think NPO stinks! Makes me crabby, too.

Julie, you and Claire are in my prayers. Make sure you ask if she is going to have "I have pee'd on myself" feeling so you can prepare her.

Hugs!
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04-26-2011, 06:32 PM   #29
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Well I emailed the doc today with all my worries. We are starting the entocort tomorrow with the understanding that a new strategy might be needed after the CT results are in.

I am better today. Sorry to be so "low" last night. So many of my dearfriends on here have had SO MUCH more to cope with than I have. I appreciate you all not lining up to kick my bahooky .

Thursday can't come soon enough for me!

Love,
04-27-2011, 05:22 AM   #30
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Don't you be apologising J!

Seriously though hun, you don't need to be sorry, we're your mates and that's what we're here for. We'll cry with ya and we'll laugh with ya and that's just the way it is.

So great to hear the doc listens to you J and I'm with you...roll on Thursday. Now if you got your patootie down here Thursday would come around so much quicker!

Loads a love,
Dusty. xxxxxxxx
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